Honolulu, Hawaii – It is an annual ritual – the fifth, this year – that our ALS community celebrates the Friday before the public’s Memorial Day. We bring out the signs that says, Mahalo, Hawaii!, to set the mood. Our state began celebrating “May as ALS Awareness and Families Appreciation Month,” with the Governor’s Proclamation in the Capitol, in City and County of Honolulu, and in other neighbor islands. We focused our attention into creating the social, educational, and political milieus for advocacy and caring for those living with the illness.

After the curbside sign-waving, we retreated to the makai side of the Capitol Rotunda to celebrate the Memorial ceremony, starting with a short welcome from Ronaele, representing ALSFH.

Ronaele welcomes the small group of ALS supporters while Terryn and Natalie wait.

Kumu Keahi Renaud offers a mele oli to summon mana to grace the intents of the ceremony. “Mana comes from all genealogies represented,” Renaud said. Furthermore, he described “horizons” as an appropriate image for this ceremony: leaving and beginning horizons.

Kumu Keahi Renaud chants a mele oli.

The mood having been set by the oli, the reading of the names begin – names that have been collected since 1998, when MDA Hawaii started keeping this data set. It has been beefed up more by ALSA’s entrance into the Hawaii ALS community service through care manager, Terryn. While Rachael and Jennifer read the names in blocks of 10, members of the audience stand up and pick up a prepared string of flowers from the basket, It is given to Natalie who ties the stringing to the lei, while Terryn continued to create shorter strings for the basket. When all names are called, the finished Lei of Remembrance is draped over the poster of written names ensconced in the empty wheelchair.

Lei of remembrance, 2019

The final part of the ceremony is the Closing Prayer and Rededication. Sandy Holds the copy of the prayer for John to read. He begins it with a few words of thanks from John, representing the pALS and families. In the prayer, we ask for guidance as we continue the work of advocacy and caring for our community, and strength in the face of many challenges during the coming year.

John speaks a few words of thanks as a pALS, while Jade, Terryn, and Rachael are emotionally moved.

Finally, the group takes the lei from the wheelchair is draped over Fr. Damian and poses for a final photograph. Then, the group convenes for the potluck.

We would like to acknowledge the various peoples and entities who have helped us get to this point of our celebrations starting from Governor Ige and his staff; the Mayors who also read proclamations for their various counties; government offices which facilitated the use of the venues; resources and connections which the ALS service providers – MDA, ALS Association, ALS Ohana, and ALS Foundation – have used for the celebrations; Julie and Steve Hess, for “With Grace” 5k Run/Walk/Roll; The Queen’s Medical Center Department of Social Work and Conference Center; Robin Arndt of UH School of Social Work; and most especially, our pALS and their families for whose cause we rededicate ourselves to work for, until there is a cure.

Malama pono.

Beneath Fr. Damian’s statue.